Sunday, February 27, 2005


Seizures make life
a struggle for father
and son

Most parents would do anything to make sure their children flourish. George Oki is no exception, but his duty was more difficult than sending his son off to school and teaching him about the birds and bees.

Oki's son Steven began having tonic clonic epileptic seizures at the age of 5, after contracting viral encephalitis. "It was like an auto accident," George said. "From that moment, our lives were never the same."

Steven's seizures -- about 150 a year -- came without warning, often lasting several minutes. He would become incoherent and unable to call out for help. In the aftermath of the seizures, he often felt lethargic and confused.

"It was kinda tough, my life," Steven, 26, said. "It's hard to get around. I can't drive, so I have to ask people to take me everywhere."

Daily challenges were overwhelming. "It was traumatic for him to go to school," said George, who took on most of the responsibility for caring for Steven because the seizures intimidated his wife and daughters.

Laws forced the integration of children with behavioral problems and special needs with mainstream classrooms, providing a tough atmosphere. "Children are the meanest people," said George, who had to take time off from work go on every excursion at school.

A parent's general tendency is to overreact to problems out of fear, George said. "But if you restrict things, you start to overprotect, and there is no physical or emotional growth."

Even so, in pools, George said, "I never take my eyes off him, and I'm prepared to jump in at any time. In the ocean he needs a buddy and can only go waist deep."

Even a bathtub can be deadly, he added, noting that Steven once scalded his hand because he had a seizure and turned off the cold water. "It sounded like someone was fighting in the shower."

Steven Oki, left, has about 150 epileptic seizures a year, something that began at age 5 after he contracted viral encephalitis. His father, George, is his primary caregiver.

STEVEN ENJOYED sports such as soccer, baseball and basketball. As he got older and sports became more competitive, he joined Special Olympics programs.

"I wanted to offer him as much opportunity to do things as possible," said George, who would end up taking over coaching duties because other parents didn't understand the seizures needed to pass. "They freaked out," he said. "I tried to minimize the situation."

There were other scares. George said medical technicians often neglect to call the 800 number listed on a wearer's medic alert bracelet to find out a person's background. Epileptics can be mistaken for drug addicts.

The Okis tried many treatments, including medications, a ketogenic (high-fat, regulated) diet and looked into surgical options to try to remedy the problem. "It was like playing poker. It was a frustrating kind of ordeal," George said.

Hundreds of factors influence seizures, which are unpredictable, said Steven's doctor, Alan Stein, who is also the medical director for of the Epilepsy Center at the Queen's Medical Center. "Major improvements come once a patient is seizure-free," he said.

For a person with no options, Vagus Nerve Stimulation Therapy offered some control, reducing the severity and duration of the seizures.

VNS is often referred to as "a pacemaker for the brain." A small pulse generator implanted in the left side of the chest sends a mild, intermittent dose of electrical stimulation to the left vagus nerve in the neck, which enables George to feel he has more control as a caregiver.

"With the monitor, you feel like you are doing something and not just waiting for it to stop. It's a more positive feeling."

VNS reduces the seizures by about 50 percent, though it doesn't completely stop them.

"Even if a person has an occasional seizure, not a whole lot of doors are open to them," Stein said. Steven can't work at restaurants because of the hot appliances, or other places where there may be hazardous materials.

Since graduating from Aiea High School, Steven has filled out about 200 job applications but has not been invited to any interviews. He finally found work at Hauoli Wholesale, where he helps to put jewelry on cards. He also helps his dad at the family business, Oki Sales, a wholesaler of furniture fabric.

"I wish people would give me a chance," Steven said. "I would work hard."

He fills his time by studying art at Leeward Community College and the Honolulu Academy of Arts, taking watercolor, oil painting and drawing courses.

Repetition is his key to learning, according to George.

"He hears only part of what is being said. It's like watching television and turning the volume on and off continually. You need to fill in all the pukas."

Steven still lives with his parents but is expected to be a contributing family member. "We really try to treat him like any normal individual," George said. "So he has to do his share."

George says he was not always patient, but Steven's condition forced him to learn patience. He continues to chart all Steven's seizures in hope of finding a pattern.

"Every day you don't have it, you feel so normal," he said. "But then it happens again and makes you humble."

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